Telling relatives, siblings, friends and neighbors...

Parents report that these strategies may be helpful in telling others or listening to their responses:

Sit with someone, tell him or her you have difficult news to share and get to the point. “Our doctor has told us that our son/daughter has a condition called . . ." Give the information that you have as simply as possible, and don’t be afraid to let others see that you feel angry, hurt, confused or afraid.

When telling children, they will need your reassurance that what has happened is not anyone’s fault and that someone will still be there for them.

Other people will take their cue from you. If you say nothing, they will say very little. Tell others what you need from them and talk to them about your feelings even if you suspect they are uncomfortable at first.

Life is sacred and the birth of a child is an occasion for joy - even when tempered with difficult news. Take part in the ceremonies and rituals of birth and do not let circumstances rob you of joy. Remember that you are creating memories for your child. They need those memories to look back on as they grow up.

Confirm that your child is a person, above all things, by using “people first” language. He or she is a boy or girl, who happens to have a disability or condition, and who is loved and valued as a member of your family.

People may try to help you feel better by telling you that the disability is “God’s will,” or that “God never sends anyone more than they can bear.” This can make it difficult to express any anger that you may feel. Recognize that, while they are not being helpful, the person is trying to share their faith so that you will not be forced to take this journey alone. Tell them that what you need right now is to be heard. Reassurance may be too much to bear.

Keep in mind that a spouse may not respond to a disability or health concern or grieve in the same way or time period that you do. Have profound respect for differences and remember to share.

Do not be surprised when people use hurtful or old-fashioned terms for a disability or condition. Gently give your view of matters and introduce new ideas as you can.

It is not uncommon to experience a sense of shame, pride or irrational thoughts and feelings. These typically occur during a time of stress and may keep you from relying on others for support. Talking to others that have gone through similar experiences may be helpful, as these reactions are much more common than you think.

Be comfortable with saying "I don't know" or I'm not okay with talking about that right now". You don't have to answer every question.